Supportive medical care in life-threatening illness: A pilot study

AbstractObjective:The goal of this pilot study was to identify the processes by which healing occurs in patients who experience a life-threatening illness.Method:Healing was examined by using two qualitative studies that employed a semistructured interview process (interviews lasted between 30 and 115 minutes). There were 10 cardiac event survivors and 9 cancer survivors. These participants came from a community hospital setting (cardiac), nonmedical holistic services organization (cancer), and a research hospital (cancer). Before participants could take part in the study, they were administered preliminary screening measurements, the first of which was an instrument similar to the Distress Thermometer. Participants then self-reported their positive life-transforming changes. If one to three changes were reported six months after onset of the illness, participants were deemed to have passed the screening. Finally, participants were tested for speaking volume and clarity.Results:An overall theme that was prevalent throughout the interviews was medical support. Participants found that their positive, life-transforming changes were typically connected with supportive caregivers who helped to create a culture of care. They also indicated that an absence of this medical supportive care hindered development of such life-transforming changes.Significance of Results:Our results indicate that a medical care team will be more effective if a positive culture of care is created. This can be implemented if the team provides comfort, which involves being more engaged in the treatment of patients as well as being more attentive to their psychosocial needs.

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A Pilot Study of Clinicians' Perceptions of Feasibility, Client-Centeredness, and Usability of the Systematic Tailored Assessment for Responding to Suicidality Protocol

Crisis ◽

10.1027/0227-5910/a000796 ◽

2021 ◽

Author(s):

Jacinta Hawgood ◽

Tamara Ownsworth ◽

Helen Mason ◽

Susan H. Spence ◽

Ella Arensman ◽

...

Keyword(s):

Pilot Study ◽

Online Survey ◽

Community Setting ◽

Ease Of Use ◽

Diverse Populations ◽

Semistructured Interview ◽

Psychosocial Needs ◽

Convenience Sample ◽

Training Requirements ◽

Assessment Protocol

Abstract. Background: The Systematic Tailored Assessment for Responding to Suicidality (STARS) is a client-centered, psychosocial needs-based assessment protocol. This semistructured interview obtains client prioritized indicators that contribute to suicidality and informs commensurate care responses for preventing suicide. Aim: To pilot the feasibility, client-centeredness, and usability of the STARS protocol, including clinicians' perceptions of ease of use; content validity; and administration within the community setting. Method: A convenience sample of clinicians who undertook assessment and/or intervention with suicidal persons and had used STARS between mid-2016 and early 2017 completed an online survey assessing feasibility, client-centeredness, and usability of STARS. Results: Of the 51 clinicians who entered the survey, 42 (82.3%; aged 25–74; 69% female) completed it. Overall, perceptions of feasibility and usability of STARS were positive, particularly regarding client-centeredness of the protocol and confidence in information obtained for screening suicidality and informing needs-based priority responses. Limitations: The pilot findings are limited by the use of a small convenience sample and the low completion rate of clinicians with STARS training. Conclusion: STARS was perceived as a feasible and useful psychosocial needs-based assessment protocol. Suggestions for improving STARS, training requirements, and application to diverse populations are outlined.

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The use of personal narratives in hospital-based palliative care interventions: An integrative literature review

Palliative Medicine ◽

10.1177/0269216319866651 ◽

2019 ◽

Vol 33 (10) ◽

pp. 1255-1271 ◽

Cited By ~ 8

Author(s):

Stine Gundtoft Roikjær ◽

Malene Missel ◽

Heidi Maria Bergenholtz ◽

Mai Nanna Schønau ◽

Helle Ussing Timm

Keyword(s):

Palliative Care ◽

Personal Narratives ◽

Hospital Setting ◽

Life Review ◽

Eligibility Criteria ◽

Theoretical Understanding ◽

Life Threatening Illness ◽

Life Threatening ◽

Care Practices ◽

Critical Appraisal Skills

Background: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital. Aim: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices. Design: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202). Data sources: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme. Results: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility. Conclusion: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.

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Decision Making About Medical Care in an Adolescent with a Life-Threatening Illness

Journal of Developmental & Behavioral Pediatrics ◽

10.1097/00004703-200104001-00035 ◽

2001 ◽

Vol 22 (SUPPLEMENT) ◽

pp. S181-S184

Author(s):

&NA;

Keyword(s):

Decision Making ◽

Medical Care ◽

Life Threatening Illness ◽

Life Threatening

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Decision Making About Medical Care in an Adolescent with a Life-Threatening Illness

Journal of Developmental & Behavioral Pediatrics ◽

10.1097/00004703-199810000-00008 ◽

1998 ◽

Vol 19 (5) ◽

pp. 355-358

Author(s):

&NA;

Keyword(s):

Decision Making ◽

Medical Care ◽

Life Threatening Illness ◽

Life Threatening

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Decision Making About Medical Care in an Adolescent with a Life-Threatening Illness

PEDIATRICS ◽

10.1542/peds.107.s1.979 ◽

2001 ◽

Vol 107 (Supplement_1) ◽

pp. 979-982 ◽

Cited By ~ 1

Author(s):

Martin T. Stein ◽

Robert Wells ◽

Stephen Stephenson ◽

Lawrence J. Schneiderman

Keyword(s):

Decision Making ◽

Medical Care ◽

Life Threatening Illness ◽

Life Threatening

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The withholding of truth when counselling relatives of the critically ill: a rational defence

Clinical Ethics ◽

10.1258/ce.2008.008007 ◽

2008 ◽

Vol 3 (1) ◽

pp. 42-45 ◽

Cited By ~ 3

Author(s):

Philip A Berry

Keyword(s):

Adverse Effect ◽

Medical Care ◽

Early Phase ◽

Poor Prognosis ◽

Coping Mechanisms ◽

Personal Reflection ◽

Initial Resuscitation ◽

Life Threatening Illness ◽

Life Threatening ◽

Initial Meeting

In cases of sudden, life-threatening illness where the chance of survival appears negligible to the admitting physician, this opinion is not always revealed during the initial meeting with the patient's relatives. Reasons as to why this withholding of the truth may be acceptable are explored through review of available evidence and personal reflection. Factors identified include: the importance of hope in families' coping mechanisms, and the instinct to preserve it; the fallibility of physicians' perception of poor prognosis in the early phase of illness; the need to avoid large swings in relatives' expectations that occur when patients appear to rally during initial resuscitation; and the adverse effect that an atmosphere of hopelessness can have on the provision of medical care. A strategy for the staged disclosure of information and the confirmation of hopelessness is then described, the aim being to find a compromise between providing a true opinion about a patient's prognosis, and regard for the opposing factors described.

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Centering Patient Expectations of a Novel Home-Based Oral Drug Treatment among T. b. rhodesiense Human African Trypanosomiasis Patients in Uganda

Tropical Medicine and Infectious Disease ◽

10.3390/tropicalmed5010016 ◽

2020 ◽

Vol 5 (1) ◽

pp. 16

Author(s):

Shona J Lee ◽

Renah J Apio ◽

Jennifer J Palmer

Keyword(s):

Human African Trypanosomiasis ◽

Hospital Setting ◽

Patient Expectations ◽

Oral Drug ◽

African Trypanosomiasis ◽

Intravenous Injections ◽

Life Threatening Illness ◽

Home Based ◽

Life Threatening ◽

Patient Concerns

The recent approval of fexinidazole for human African trypanosomiasis (HAT) caused by T. b. gambiense enables improved patient management that is pivotal to elimination. Effective in both the early and late stages of the disease, it obviates the need for invasive lumbar punctures which guide therapy, in some patients. Unlike existing injectable treatments requiring systematic hospitalisation, fexinidazole’s oral administration will allow many patients to be treated in an outpatient or home-based setting. Drawing on interviews with 25 T. b. rhodesiense HAT patients managed under existing protocols in Uganda where trials of fexinidazole will begin shortly, this article explores patient expectations of the new protocol to help HAT programmes anticipate patient concerns. Alongside frightening symptoms of this life-threatening illness, the pain and anxiety associated with lumbar punctures and intravenous injections of melarsoprol contributed to a perception of HAT as a serious illness requiring expert medical care. While preferring a new protocol that would avoid these uncomfortable procedures, patients’ trust in the care they received meant that nearly half were hesitant towards shifting care out of the hospital setting. Clinical observation is an important aspect of existing HAT care for patients. Programmes may need to offer extensive counselling and monitoring support before patients are comfortable accepting care outside of hospitals.

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